Lyme test equivocally positive????????

Discussion in 'Fibromyalgia Main Forum' started by TiredbutWired, Aug 31, 2002.

  1. TiredbutWired

    TiredbutWired New Member

    Hello,I just got this letter from my cfs specialist;Enclosed is a copy of your recent laboratory and chest x-ray reports.Remarkably,your Lyme test was equivocally positive.This is probably insignificant,but in light of this result I recommend that you try the antibiotic doxycycline twice daily for at least two weeks.Please keep a diary of how you respond to this medication.I will discuss this with you further when we speak.I have been on doxy twice a day for about 2 months.Does anyone have this?Is it just another abnormal test that is seen in cfs?Any info I am confused!Love,Tracey
  2. TiredbutWired

    TiredbutWired New Member

    Hello,I just got this letter from my cfs specialist;Enclosed is a copy of your recent laboratory and chest x-ray reports.Remarkably,your Lyme test was equivocally positive.This is probably insignificant,but in light of this result I recommend that you try the antibiotic doxycycline twice daily for at least two weeks.Please keep a diary of how you respond to this medication.I will discuss this with you further when we speak.I have been on doxy twice a day for about 2 months.Does anyone have this?Is it just another abnormal test that is seen in cfs?Any info I am confused!Love,Tracey
  3. TeaBisqit

    TeaBisqit Member

    I was bit when I was about eight years old and at that time, no one even knew Lyme existed, so I wasn't treated. By the time I was fourteen, I started to get arthritis in my right leg. But I had broken a bone in that foot a few years before that, so I just thought it was from that. But as the years went on, I got sick and sick and sicker and sicker. And yet the stupid tests never showed a real positive. All the antibiotics never helped me. My doctor just gave me minocycline because she feels it's more broad spectrum than the others. And it can't hurt to try it. Since the Lyme and CFIDS/CFS symptoms so often overlap or are identical, I think it's nearly impossible to tell one from the other. Until we have a real bloodtest for CFIDS, we'll never really know how much Lyme plays a part in our illness.

    TeaBisqit
  4. loonie

    loonie New Member

    Hey, TiredButWired!

    I may have misunderstood something, but what I got out of your post was either a severely incompetent DR, or an overworked staff.

    Your Dr thinks you should be on doxy for a couple of weeks but you have been on it for two months? Maybe the letter was supposed to go out two months ago. Otherwise I would have serious doubts about the DR's competency-at least I would ask what the dickens is going on??

    I was tested for lyme (I asked for the test) and when the test results came back my PAC didn't know that the B.Burgdorferi was the lyme test. Anyway mine was 0.59, with negative being <0.81-negative but close. What was yours?

    Loonie- (hope this doesn't post twice-forgot to sign and hit the stop button)
  5. Gail8899

    Gail8899 New Member

    I can tell you one thing....there is absolutely nothing insignificant about Lyme disease. People do die from it, and some who live with it wish they were dead! Doxy is ok if you were just infected, but not if you've had it for a long time. IV antibiotic treatment for 21 days, and then strong oral ones given until you no longer have symptoms is the protocol for late stage Lyme. (especially if it has gone into neurological symptoms or cardiac symptoms.) I've been fighting it since 1987, and I haven't whupped it yet. Good luck to you.

    .....Gail
  6. TiredbutWired

    TiredbutWired New Member

    I am just so frazzeled trying to find out what was going on.My old doctor put me on doxy because she thought I had a infection but did not test for lyme.I went to a cfs specialist and he did a lyme test and sent me the results along with a script for doxy.He must have forgot that I had been taking doxy.So there is a little confusion.Lyme Ab?Total Immunoglobulins 0.92.Lyme Igm WB Interp.Positive. It looks like 3 of the borrelia-bands are present.Thanks for helping,Tracey
  7. TiredbutWired

    TiredbutWired New Member

    I posted my results on other post but my question is if I have been on Doxy.for a couple months would the numbers have went down since I was not tested for lyme before?Thanks for any info,Tracey Ps:I have been working with exotic animals for a few years!
  8. Gail8899

    Gail8899 New Member

    I'm not sure if the antibiotics would cause your test to be a lower positive or not. The Western Blot tests for antibodies to a certain protien that is present in Lyme. (I think I have that right, I have severe brain fog right now)
    I think that antibiotics would maybe cause fewer antibodies since they do the job for your immune system, but my best friend, who also has Lyme, and is much sicker than me tested negative on the Western Blot but did culture positive in urine test.

    When I first got Lyme I took massive ear and sinus infections every month, (I've had an ear infection again for over a year now) so I was on antibiotics 10 days out of the month nearly every month for 6 years. My friend came down with it at the same time but had no antibiotics. Logic would tell you that she should have more antibodies than me, but she has none. I guess it really depends on whether your immune system recognizes the Lyme as an invador or not rather than antibiotic use.

    Seems that the ones who test negative for antibodies get much sicker and more debilitated too.

    ...Gail
  9. catlady51

    catlady51 New Member

    Hi Tacey
    I'm new to this board and although I am certainly butting in, I hope you'll forgive the intrusion. My question is, did I understand you to write that CFS causes abnormal blood tests? Do you know in what areas? I've had tests show a minor positive for various things and wonder if this is the cause.
    Again, sorry for the intrusion.
    Lyn
  10. TiredbutWired

    TiredbutWired New Member

    Thank you so much for the infomation,it really helps.I just do not know what is going on and my lungs hurt all the time but chest xray clear,also having problems with chest pain,dizzy fainted 2 days ago and joints very stiff and painful sometimes.Along with everything else I do not know if I should be happy they found something or if this is just going to be another run around.I was hoping the Lyme was easier to treat than cfs/fm and I could get back to some of my life quicker.Just wishful thanking,I am sorry you have had to suffer so much.Do you also have cfs?Tracey
  11. TiredbutWired

    TiredbutWired New Member

    Love your name and welcome,I am new too.Your question would be a great topic because all the pros would have the answers but I do believe that there are many abnormalitys with this strange illness.I would love to hear what the others had to say.Tell me more about your story,could use a distraction and would love to listen.Tracey
  12. garyandkim

    garyandkim New Member

    except there is a test that screens out the vaccine to check. Just thought I'd see if you had the shots or anyone else. I can't remember what the name is of the company that does the screening sorry. If you have Lyme then make sure when you finnish the antibios they test you every few months for a year to make sure it got it all. Then Every year we all should be tested if we live in Lyme territory. Our whole family gets testes annually.

    Good luck and hope you only have Lyme. They can cure that one. Kim and Gary
  13. griswoldgirl

    griswoldgirl New Member

    My daughter's lyme test came back equivicol and then they did a test called a Western Block to confirm. The doctor told me this was positive and put her on doxycycline for 3 weeks with no improvement to her symptoms.

    I now have taken her to a infectious disease specialist who informed me that her western blot was indeed negative and the doctor must have interpreted it incorrectly. She has now been tested for numerous other vector born diseases(she was bitten by a tick in the mountains this summer) She already has fibro andas had flu-like symptoms now for going on two months.

    My advise is to look up lyme disease on the CDC website and learn what you can-I did and found there was no way she had it-and the ID doc confirmed it.

    Lyme is very difficult to diagnose-it is not cut and dry-clinical signs are used with bloodwork to decide if the diagnosis is true.

    did the doc do a western block blood test to confirm equivicol testing? If not, they need to or you need to go to a specialist which deals with this disease. He ran a number of tests on her last week and we will know what is up with in the next couple of weeks. Could all just be fms with her and he said perhaps Cfs too-we'll see.

    Unfortunately I left them with more questions than answers and just remedies to treat her symptoms-but I feel I am in good hands with him-he does not give up easy and has promised to find out what is going on with her. He said if all negative to take her to a rheumatologist which she has already been to before-with that statement I did looseit for a minute because I realized my daughter was about to enter into to doctor HE** where I have been for years.

    I wish you luck, and please get a second opinion-doxy is a very strong antibiotic to take and not need. An equivicol test is not an answer-there is further testing to be done according to CDC guidelines.

    cathy
  14. Gail8899

    Gail8899 New Member

    guidelines are the last ones you want to go by for Lyme. There is no 100% effective tests for Lyme because no one has cared enough to give the funding neccessary to get one. Mainly because the CDC insists that Lyme is easily cured with a short course of antibiotics, (this may be true in very earlty Lyme, but not untreated late stage Lyme) and because the gov. is too busy climbing into bed with Smith Kline Beehchum(sp?) to tout a vaccine against it that had to be pulled from the market because it was killing and diasabling people.

    On the Western Blot, if you get a positive, then you definately have Lyme, It's false negatives that are the problem with that particular test. I don't know if I also have CFS or not. No drs around here believe in it, but I have all of the symptoms. (drs here don't treat late stage Lyme either because it will cause them to lose thier license)

    .....Gail

  15. TiredbutWired

    TiredbutWired New Member

    I do go to a doctor today but he is a endo.I finally got enough research to figure out my test and I am sure it is going to be another dead end.Isn't that horrible to wish for Lyme disease because it seems that it could be better than cfs/fm?From what I can see they did do the western blot.My Igm is positive {2 bands}.The IgG is uncertain but only has one band.I found a great article Understanding the western blot.So I guess this will just be another one of those abnormal test that is not important enough to mean anything.All though Dr.Lapp was excited something new for him to add to his research.Love,Tracey
  16. TiredbutWired

    TiredbutWired New Member

    I saw someone was asking about Lyme.